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Friday, December 16, 2011

Leave Alison Alone!

Remember the Youtube clip that went viral some time back of the young guy imploring people to "Leave Britney Alone"? Well I feel a bit like saying the same thing some days, but not in defence of Ms Spears, rather Alison Singer. Don't know who Alison Singer is? Keep reading.

Alison is the founder of the Autism Science Foundation, a small US based organisation. Prior to that she was with Autism Speaks, a large US based organsation. And during her time at the latter was involved with the production of a video called Autism Every Day, created to show the challenges of living with autism from the perspective of parents in an effort to promote awareness and consequently donations. See link if you are not familiar with it. (Warning some scenes may be distressing for readers.)

Understandably many people with autism were upset by the overwhelmingly negative picture of autism, and of course the lack of autistic voices. It grossly misrepresented the spectrum of experiences that autistic people live with. And Alison's candour in the video about wanting to drive off a bridge was taken by many as a suggestion that contemplation of killing your child due to autism was understandable. In fact some autistic people feel they are entitled to an apology from Alison, for "wanting to kill people like me". See below in the comments section for an example of a fairly typical conversation on the issue.

Thing is, I don't hear Alison saying she wanted to end her and her daughters life that day because of autism. But that she felt absolute despair at her conundrum at that point in time. A sense of hopelessness, no doubt the result of layers of personal and institutional struggles that at a moment in time felt all consuming and overwhelming. I think it's an emotional space many parents of autistic children can relate to. And yet like Alison most of us do not follow through on our darkest thoughts. We cry, sob, scream, feel sorry for ourselves, our children, drown in feelings of frustration and a sense of impotency against bureaucratic barriers, widespread ignorance and the cards life has dealt us and our child/ren. Then we dust ourselves off and get on with things. Which is precisely what Alison Singer did.

She did what so many other remarkable parents do, she got involved with an organisation she believed could help make a difference. That was Autism Speaks. Then when AS was continuing on in their focus of looking into vaccination links to ASD she left, as Alison felt pursuing that direction was diverting funds from new research that would benefit those with autism. Consequently setting up the Autism Science Foundation.

My thinking is this woman who had been in the depths of despair was able to move forward, and then create an organisation that is making a real difference, and that is commendable. Even remarkable. People might not like to hear how desperate she became, but she spoke her truth. If we send a message to parents that their difficult stories are not to be told we may increase their sense of social isolation. That, to my mind, is a greater risk factor for harm to be done to autistic children, than hearing the stories of parents who share their internal emotional struggles.

I think continued anger at Alison is misplaced and fundamentally unfair. I see in Alison someone who cares deeply about autistic people. Perhaps if she had her time again she might not participate in the making of Autism Everyday? I'm not sure, but she does provide a response to the criticism here,

Perhaps as Marc Rosen states in the comments section there is no room for statements such as hers in a public service announcement. But I can't accept that parents who choose to take the life of their autistic kids do so because they watched the Autism Every Day video. I believe they do so because they are not coping. And that inability to cope may come down to a multitude of personal reasons, none of which are simple or easily rectified. However as stated above social isolation is probably one of the greatest risk factors. If parents feel they will be harshly judged for sharing their true feelings they may be less willing to reach out. We need to be careful to not perpetuate a culture of autism as tragedy, but also we need to encourage those who feel desperate to reach out without fear of disapproval. So while some of the criticism of the autism speaks video is valid, the ongoing attacks on Alison inadvertantly create what it seeks to alleviate.

Many in the neurodiversity/autistic advocate crowd argue public stories of autism that are pervasively negative create a culture in which autistic children and adults are put at risk. They suggest parents exposed to stories of insurmountable stress due to raising an autistic child will be pushed into committing unforgivable acts out of fear and misunderstanding. I would suggest that it is not the negative social narrative that causes these killings, but rather lived reality. People who are not coping with very real day to day stressors.

Either we encourage people to talk openly about the difficulties of raising an autistic child, and that message will subsequently infiltrate popular media, or we maintain they should keep their stories to themselves, which as I explain above is potentially far more problematic in term of generating the risk that parents turn inward rather than outward with the accompanied sense of social disconnection. It's a complicated, thin line to walk between giving people a sense of optimism regarding the future of their autistic child whilst acknowledging their struggles. Very few people do this well. And the Autism Everyday video fell well short.

Sharon, I think you're missing an important point here, and that's the issue of context. These remarks were made in a video that was dehumanizing to autistic people. It wasn't just Ms. Singer's remarks. It was the whole video, and her remarks (which were themselves made without clarifying the context in which she had those feelings -- the dehumanizing alternatives available to her daughter) added to the impact.

Dehumanization of anyone generally leads to very, very bad consequences. Even a cursory reading of history will show that. I want parents to be able to express their feelings. And I also want parents to be sensitive to the fact that the way they express their feelings can have a significant impact in a culture in which disabled lives are chronically devalued. There was a way for Ms. Singer to express her feelings without it seeming as though she wanted her daughter dead because she was autistic. She could have said, "It was the lack of services that drove me to despair," and that would have been an opening to talking about creating social justice. After all, disabled people consider suicide for exactly the same reason, and some follow through on it. I think it's the lack of context for her remarks, along with the dehumanizing context of the video, that combined to spark a great deal of much-deserved outrage. And I think that Ms. Singer understands that.

I appreciate that Ms. Singer has recognized what she did wrong. I really do. I wish more people would make a mea culpa when it comes to these things.

For more thoughts on the issue of context and feelings, you might want to look at:

"These remarks were made in a video that was dehumanizing to autistic people."

I think a better way of putting that is that some people who present themselves as having an autism spectrum disorder have said that the video is "dehumanizing" to them.

I am not a fan of Ms. Singer or the Autism Science Foundation. But, I certainly think she has a right to talk about her views of autism and how it has made her feel without the thought police telling her feelings are wrong.

There is a line here between saying something bad about the developmental disorder known as autism and "dehumanizing" the people who have the disorder. You can talk about one without talking about the other. I can say that I don't like autism without implying anything at all about the people who have the disorder.

The problem is that certain people choose to make autism a fundamental part of their identity. These people tend to view any negative comment about autism as an attack on them personally - even when nothing of the kind was meant.

So the problem isn't entirely that negative comments about a medical disorder "dehumanize" the people who have the disorder but is also partly that people who have the disorder over-identify with the disorder.

Regardless, Sharon is right.

If you want to make matters worse for the parents of children on the spectrum and by extension the children themselves, by all means, tell them that they are not allowed to think about autism that way. Tell them that they are not allowed to talk about their child's disorder in a certain way. Or better yet, label a group of them "evil" because they said something negative about autism and blame a child's murder on them.

After all, what's the worst thing that will happen when you pile even more stress and guilt on the shoulders of people who are (typically) already having a bad time of it.

With respect Rachel, the quote from the video was "..off the George Washington bridge, that would be preferable to having to put her into one of these schools." People ignored the context she DID provide in the original video and statement, because it makes for a more alarming story to do so. What I'm saying is she did provide context to her statement, and she was sharing exactly what her feelings were and why. That didn't deserve the response it received.

My daily life was once a lot worse - every single day - than what is shown in that video. There was no up-side at all. It was a violent, horrible existence for me and my son, with very little in the way of joy or a break for anyone involved. Only time and an incredible amount of therapy over years, brought me to my much happier reality now, with a far less severely autistic child.

The story told is not a distortion or one-sided telling of autism, it is A story of what autism can be like, if it painted all autism in that light, then that is the problem.

I clicked through to the post you suggested. It is a social disability model approach to disability in general and to autism specifically. It is that approach which I think is rather unhelpful and unfounded a large amount of the time. There is a difference between social awareness and awareness of the impact of society attitudes, and thinking that autism wouldn't be a problem but for those issues.

I do have a lot of respect for you and your experiences, you're an amazing woman, but I still think Sharon's post makes invaluable points that don't get heard enough and aren't well understood.

Hi Rachel, as stated above by A&O, Alison was very clear it was about the school choices for her daughter not autism that generated her desperate feelings, and this fear was triggered by memories of what her brother, who is also autistic had suffered. I urge you to watch the clip again despite the fact I understand how difficult it may be. I think I made it clear enough in the post that I understand why some people with autism find the video problematic. I just hope people can appreciate that there are risks in trying to prevent parents from sharing their challenges. And there is a difference between dehumanizing and speaking your truth . AS I say it's very difficult to get right.

(I should perhaps clarify what I'd hoped was clear in my comment above, but which I can see some might misunderstand: It is not just me who is happier now that my son's autism is significantly less severe. Everything I did with him to get him to that point was about him, not me. It is undeniable that he is a significantly happier child now; he can communicate his wants and needs and understand those around him, he can make and retain friends and play with them in the playground, he can go shopping with us and try new experiences and foods which he greatly enjoys, instead of being the isolated, tearful, angry child he once was. My life is better as a consequence of his life being better; that is the order of emotional priority for me. Just thought that might need saying.)

I stand corrected. I didn't remember Alison's statement in the video correctly.

However, my point about context still stands. For Alison to have talked about her level of despair in the context of a discussion of a lack of meaningful supports and services would have made sense. I've heard disabled people talk about their despair in those contexts, and it sends a powerful message about how abandoned people feel by their communities. But a dehumanizing video was the wrong place, because her statement about wanting to kill herself and her child, no matter what clarifications she made, too easily reinforced the general tenor of the piece. I think that she realizes that mistake and has said so.

And saying what she said in front of her child was flat out wrong, no matter what the context. At that age, a child does not need that information; it would be traumatizing. It's probably best to assume that children understand, even if they can't show it.

I'm actually probably more critical of Alison Singer than you are, Sharon, I think she has a history of playing a victim at all turns, but she may be doing some great things now. I'll even say I'm a little leery of Autism Science Foundation, but I'll do some research and see what I think. I think Landon Bryce has pointed out some brilliant reasons to oppose Autism Speaks on his site ThAutcast, but what has always struck me is how people misinterpret her "driving off a bridge" comment. Her context was pretty clear. She made a hyperbolic statement pretty common in literature- she said comparing driving off a bridge to the horrible conditions of the educational system in the US for autistic children, driving off a bridge would be better. It's hyperbolic and not meant to be taken literally. You are supposed to take away from it that the educational system in the US is THAT piss poor.

In my mind there are a hundred things to be critical of (I especially take issue with the fact that she totally, completely has the means to treat her daughter- her daughter will NOT slip through the cracks- and yet, she raises money USING the argument that the school system is failing, and spends that money on things other than providing educational services for children with autism whose parents DON'T have the means to treat their children). But her comment on Autism Every Day does not advocate killing children.

"And saying what she said in front of her child was flat out wrong, no matter what the context. At that age, a child does not need that information; it would be traumatizing. It's probably best to assume that children understand, even if they can't show it."

"If parents feel they will be harshly judged for sharing their true feelings they may be less willing to reach out. We need to be careful to not perpetuate a culture of autism as tragedy, but also we need to encourage those who feel desperate to reach out without fear of disapproval. So while some of the criticism of the autism speaks video is valid, the ongoing attacks on Alison inadvertantly create what it seeks to alleviate."

Rachel, thanks for taking the time to share your thoughts here. I understand this is probably a difficult 'conversation', and I appreciate your contribution. I wonder how you think we can constructively create spaces for parents to share their feelings about raising autistic children,( beyond the social barriers)? The very real struggles that A&O mentions above. You mention a "lack of meaningful supports and services", but what of the day to day challenges that are directly related to the neurology of autism? How can we provide avenues for honest expression of feelings like the ones in Autism Every Day, without people feeling autistics are being dehumanised? I genuinely wonder and would appreciate any thoughts on this.

You say, "In my mind there are a hundred things to be critical of (I especially take issue with the fact that she totally, completely has the means to treat her daughter- her daughter will NOT slip through the cracks- and yet, she raises money USING the argument that the school system is failing, and spends that money on things other than providing educational services for children with autism whose parents DON'T have the means to treat their children). But her comment on Autism Every Day does not advocate killing children."

I dont really understand this comment. The money she raises for ASF goes towards all sorts of research that will hopefully benefit autistic people. I don't see that she has any responsibility for raising money for educational facilities. Perhaps I am misunderstanding your point?

I am referring to Autism Speaks in this particular example (although I know she has moved onto the Autism Science Foundation) although your point still stands: they have no duty to raise money for educational purposes. But in the US, Autism Speaks is THE charity organization people donate to when they want to "help people with autism." They have, as far as I know, been open about what the money they raise goes towards, and they have been compliant with US law in this respect. Still, I find it distasteful to highlight such problems such as a broken educational system in a video that essentially promotes an organization that does very little to solve that problem. It's a little misleading.

Oh I see your point now, but not sure I agree. The video was highlighting the day to day issues these parents are confronting, the education system being the context at which Alison said she was despairing. I'm not sure what AS could do to rectify the education situation in the US, except lobby and awareness raise. They might rightly consider that the Education Dept has primary responsibility for those issues though.

I'd be, well suicidal, if some random told me that it was wrong to express MY feelings and MY thoughts within the context of MY day to day life. Unless I was stating an intent to do harm, which would be cause for alarm, other wordy intellectual PC knobs should just go back to reading Plato and stop turning autism parenting into abstract academic theory.

Autism Speaks is a non-profit organization. They accept private money from outside sources. A LOT of it. They could literally build a better option for autistic children.

While I have no right to say what a charity does with money that they have gone out and collected on their own, I think by representing the "common" problems of autism and then not addressing them with the money they raise is misleading. Many people give money to AS with the wrong idea that AS somehow uses this money to support families. They don't.

The woman on there talking about not being able to go for coffee- a) she can afford respite care. b) she's indirectly asking for money c) she has no intention of using that money so more moms can go out for coffee every once in a while. She can afford respite care, so why would she care about respite care. She wants the things SHE cannot afford- more scientific answers- that are most likely NOT going to be seriously beneficial in this lifetime. Which is fine. Her choice. Just don't go on TV and bitch about not being able to go get a coffee, with the subtle message "Donate to Autism Speaks."

Let me be clear. As misguided as I think their efforts are, I really *really* wouldn't care if they were honest about it. I think they put on this persona that they somehow are here to be a safety net for families affected by autism, and I think people give them money thinking that their money would be used to somehow provide financial support for needy families. But they are in actuality a bunch of rich people who have the means to take care of their children asking the WORLD for HANDOUTS so they can continue genetic research and look for causal links. I really sympathize with them- I think they sincerely think all the money in the world for treatment and support is NOT ENOUGH (not shouting- emphasizing, btw) and it probably isn't. But to me they are like a bunch of rich kids who want lobster, so they start a group called "Stop Hunger Now" and go on TV and talk about problems the homeless face. And then step over homeless people on the way to the 5 star restaurant. Yuh.

I think that Autism Speaks has always been very clear about what they do with the money they collect. If you take even a quick look at their website, they tell you quite explicitly that they are a "autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families."

Nowhere in that description is any talk about providing social services to families who have children on the spectrum. AS may seem like a rich organization but the roughtly 33 milion dollars they raised in 2010 wouldn't go far. There are simply too many familes who would want services and too little dollars.

I am honestly baffled why people often criticize AS for not doing something that they never said they were going to do.

I find Autism Speaks quite grand-parenty if that makes sense? A bit removed from what is possible in the modern era and a bit overly sentimental when describing autism publicly. As a parent I want to focus on the possible and positive but as a campaigner I have to shake people up - it's hard. Still I can't help wondering what could be achieved if Autism Speaks focused on Empirically researched, peer reviewed interventions and worked on getting people with autism accepted and celebrated for who they are xx

MJ, I can agree that they have been fairly clear about what they are going to spend their money on, as I said in my second comment. Where they get fuzzy is in a video like Autism Every Day. It's a PR campaign that highlights completely different problems than the ones they plan on addressing, in my opinion. But, really, I'm not *morally outraged* by it or anything, so I'm gonna just go ahead and agree to disagree here.

Me - ironically the conversation is better now than when I came online 7yrs ago. The attacks IMO were worse then, than now. Now there are many more autism blogs and places like ABD allow for a lot more voices and a lot more opinions. Before it was just the Autism Hub and they refused to allow the negative, only the rosy.

I'm sorry Rachel, but there were many, many horrible days in austim-land. To sit there on the upper end of the spectrum. To tell us how we're poor parents time and time again and how we should be uplifting and joyful... Is more harmful than the rant about the unending fight against the system, the behaviours, and as Me says... the social stigma that leaves us cut out from society.

We are cut off from society and the adult autistics want to cut us off from advocacy... Yet, as parents we're suppose to agree with this.

We're in the trenches day in and day out. We're the reason those adult voices are heard. We've pushed for proper therapy, proper respite, proper education... WE get the legislations changed... WE do. I'm sorry if autism isn't rosy and wonderful... but just ask my severely autistic 10yr old... he'll personally tell you it "sucks" since he's unimpressed that he cannot go here or there outside without supervision like his older bro. That he cannot attend different programs due to his autism without support. That people actually don't want him there... YET, he's easy going, non-behavioural and happy.

Autism is a disability... PERIOD. To claim it is not, does more harm that good to those that desperately need the services.

What a difficult topic to tackle and kudos to "Me" for bringing these discussions to the table with regularity. I love the post and the respectful nature of the comments, as well as all the extra links and bits of information. It's definitely a lot of food for thought. But personally, for me, the bottom line is I agree with what people have said about the video being misleading for PR purposes. At the same time I couldn't agree more with "If we send a message to parents that their difficult stories are not to be told we may increase their sense of social isolation. That, to my mind, is a greater risk factor for harm to be done to autistic children, than hearing the stories of parents who share their internal emotional struggles."

Thanks everyone who has added their thoughts. It is a difficult topic and as I have said, complicated to both advocate for a more positive, less stigmatizing social narrative, whilst simultaneously allowing parents who really are coping with incredibly difficult day to day situations to express how they feel. There has to be way for both to occur, and I'd like to think I try hard to do so in my own little part of the world.

Being autistic and being the parent of an autistic child are two waaaaaaaaaaaaaay different set of experiences.

I am both. And I can tell you, that having an autistic child makes you cast aside a lot of the self-centredness that you acquired at your own diagnosis. You only have the luxury of reflecting on your own specialness in relation to that of your child. Autism advocacy becomes all about being the parent of a disabled child, and who cares about me?!

See Ajax this is stuff I'd love you write more about in your pull no punches/take no hostages kind of way. When you say "and who cares about me?!" Is that saying, your concern for your child becomes far greater than any concerns you may have had for yourself and your own struggles as an aspie? That those self advocates without autistic children can't understand the emotional forces that push parents buttons everyday? Just wanting to clarify.

"Either we encourage people to talk openly about the difficulties of raising an autistic child, and that message will subsequently infiltrate popular media, or we maintain they should keep their stories to themselves."

I see a third option — which is that all people have the right to talk openly about their experience, but that we all also have the right to hold others accountable for the consequences of what they say. I have the right to put my own and other people's stories in context, to engage with them critically, and to think about the way they interact with cultural narratives about disability.

Some people may see this as abstract intellectual bullshit, and that is certainly their right. I see it as a needed counterweight to the overwhelmingly negative societal messages about disability in general and autism in particular. These messages have concrete, real-world consequences in public policy decisions about education, health care, therapy, accessibility to public spaces, community inclusion, funding for services, etc.

As I have said before on my own blog, I do not believe that the murders of autistic children are a direct result of parents talking about how difficult their lives are. But when parents talk about these difficulties and *blame them on their children,* rather than on the institutional structures that create or exacerbate the difficulties, they contribute to a hostile and negative climate for people with disabilities.

Yes, there are neurological issues that make it hard to live with a child with certain disabilities, completely separate from social/cultural context. My son has a sleep disorder. I haven't slept 3 consecutive hours in more than four years. This would suck, frankly, no matter what kind of culture we lived in. But you know what makes it suck more? An economy that requires me to work outside the house to pay the bills, despite the fact that my son requires 24-hour care and rarely sleeps. Health care and public transit systems that requires me to piss away thousands of hours of my life traveling to and from useless medical appointments. A state services bureaucracy that eats up more of my time and delivers almost nothing.

I would still be really really tired without the societal stuff, but social issues contribute hugely to my stress and exhaustion. And when we don't acknowledge the ways that those issues contribute, we perpetuate the idea that all responses to disability should be focused on changing the individual, rather than changing society.

Hi Sarah, thanks for your comment, there's a lot to take away from it but allow me a couple of points off the cuff.

Yes I agree we have the right to hold others accountable. All I am trying to ask in this post is that people be mindful of how their criticism of Alison Singer (or what some may call holding her to account) could actually have unintended negative consequences. I think we might be asking too much of parents when we suggest they ought to be more thoughtful of how they articulate their emotions. After all we are talking about people who are stressed, overwhelmed, scared and often sleep deprived (as you know). It's at those points in time they most need to reach out for help. And there are social supports out there as inadequate as they be.I do think that at a broader socio political level organisations like Autism Speaks could do more to provide a balanced approach. However my point is about the ongoing anger at Alison for daring to voice her feelings of distress at that point in time may lead to struggling parents feeling even more isolated than they do already. That could have "concrete, real world consequences" as well.

I am not arguing against the notion that social barriers and institutionalised ableism profoundly impacts people with autism. I hope that comes across.

I can't stand this hag with the huge bags! She is narrow minded and arrogant and can't see any views but her own when it comes to autism. She's revolting in so many ways and I would never support anything she is involved with.